caregiving and racial considerations during a pandemic online training education

Conditions: Caregiver Stress Syndrome

Summary: the overall goal of this project is to develop and prototype-test a highly accessible program designed to enhance the mastery of black american caregivers to provide care to family members or friends living with a dementia illness in a time of crisis. participants will be asked a series of questions in a baseline interview, and then will be asked to partake in the care course during a 6 to 8-week period.

black americans have over double the prevalence of alzheimer's disease and related dementias (adrd) compared to whites, thus increasing the number of family members providing care for a person living with dementia (plwd) within this racial/ethnic group. black american caregivers typically deal with the complexities of caregiving through the lens of race and associated health disparities. due to the centuries-old disadvantaged social history of black americans, a number of unique stressors, vulnerabilities, but also resources, have emerged which could inform and affect black american dementia caregivers' experiences and well-being. there is overwhelming evidence that black american caregivers and their care recipients experience disparities in care, have lower rates of formal service use, and are generally under-treated. now in this seemingly worst of times with the coronavirus disease 2019 (covid-19) pandemic, the disparities are more apparent: black americans (13.4% of the population according to the 2019 u.s. census bureau), account for approximately 25% of covid-19 related deaths and are dying at a rate more than 1.5 times higher than their counterparts. the proposed care course is meant to address the cultural reality of caregiving while black - not just during the pandemic, but beyond. the program seeks to develop caregiving mastery while and by understanding, acknowledging, and addressing the influence of race, culture, and disparities on caregivers' mental health, and their medical, spiritual, and safety needs. the researchers will first establish a preliminary competency-based course curriculum storyboard of 40-50 modules and draft scripts for the instructional videos that will anchor the care course, through iterative design studio sessions with black faith and community leaders, black american caregivers, course faculty, covid-19 specialists, dementia experts, and other clinical experts and working with emory nursing experience instructional designers. then, partnering with a variety of faith-based and community organizations and others, the researchers will identify a sample of black american caregivers who will be invited to enroll in the care course and participate in formative and summative research related to its usability, salience, and preliminary efficacy.

Eligibility criteria:
inclusion criteria: * self-identify as black american * unpaid principal caregiver of a community-dwelling person living with a dementing illness and who is the principal companion of that person during healthcare encounters * provide at least some hands-on care multiple times a week, if not daily * access to and ability to use broadband internet services to engage with the care course * not planning to move the person living with the dementing illness to an institutional setting within the next six months exclusion criteria: * cannot provide consent * prisoners * cognitively impaired adults * not able to clearly understand english

Keywords: disparities black american caregivers dementia caregiving